Alberto was born on February 12, 2019, in the United States from a healthy full-term pregnancy and uncomplicated delivery.
But at only 2 weeks of life, after 10 perfect days at home with us, his health deteriorated unexpectedly and, after a CT Scan was performed at the Emergency Room, he was diagnosed with Cerebral Venous Sinus Thrombosis (a rare form of perinatal stroke) complicated by a severe hemorrhage that caused the infarct of his left thalamus and development of hydrocephalus.
Doctors told us that his quality of life was so irreversibly compromised that he would not benefit from treatment. And so, after two weeks of Intensive Care, Alberto was discharged with palliative care and no hope, fed through NG Tube and with a developing Hydrocephalus.
In the days following his hospital discharge, days that I know recall as “limbo days”, while searching for an expert on our son’s condition we came in contact with Doctor Luca Ramenghi and Eu-Brain Association which immediately took Alberto’s case to heart.
A line of intense and almost daily communications began between Houston and Genoa, made of updates, remote consultations with other specialists, MRI Image disks sent via priority mail hoping they would reach Genoa as quickly as possible.
And an opportunity arrives soon: they offer to admit Alberto at the Gaslini Children’s Hospital in Genova to perform surgery.
In the meantime, Alberto regained his suckle reflex and we successfully took out the NG Tube for good.
On April 5th, Alberto, who was only 8 weeks old, takes on his first intercontinental flight together with us parents, his nonna and his older brother Francesco (3 years old).
When we landed in Genoa, the shared feeling of my husband Marco and I was: “We’re safe now”.
Alberto is immediately admitted and surgery is performed to place a VP Shunt to treat his Hydrocephalus, he is also started on anticoagulation therapy during that time. He stayed in the hospital for a little over a month, dearly taken care of by incredible nurses and under the constant meticulous attention of his medical team. Not surprisingly, he gifted us with his first social smile while at the Gaslini Hospital, almost to thank everyone for the opportunity he was given.
On May 10th he finally returns home to begin a new life with his family in Italy.
And it was, in all respects, a new life for all of us that, together with Alberto, were on the edge of dying and with whom we experienced re-birth, guided by his enthralling strength, his boundless patience and his extraordinary tenacity which he showed everyone from the start, teaching us that the greatest hardships in life lead to extraordinary successes with the help of the right people.
Today Alberto is 12 Months old, he commits with consistency and always with a smile to all his physical therapies and has not only exceeded by far his initial prognosis, but continues to surprise doctors at every follow up, infecting everyone with his beautiful always happy personality. In our family, Alberto is the “happy catalyst”, always putting everyone in a good mood with his infectious smile. It’s impossible not to fall in love with him.
With gratitude we recognize the efforts and great involvement that the Gaslini Hospital pledged to Alberto’s case, with the humanity and great professionalism of its Doctors alongside the immense support of the Eu-Brain Association to our family which together have been fundamental to restore our family with two things that had been brutally taken from us: an opportunity (of care) and hope.
Forever Grateful,
The Bulgarelli family
